Ask the Doctor
Questions about kidney disease? Risk factors? Signs and symptoms? Are you concerned about yourself, a friend or family member? Ask Dr. Spry.
Today, medical advances have made it possible for many diseases to be treated successfully, adding to life expectancy and quality of life. However, life-saving advances sometimes mean watching someone you love being kept alive when you are not sure what his or her choice would have been about the treatment being given. Often, doctors and families are asked to make difficult treatment decisions. In some cases, the courts have been called on to make these decisions.
Many decisions can be made by patients and their families before a medical crisis occurs. Patients with kidney disease might consider preparing a legal document to guide loved ones, doctors and other health care professionals in providing treatment in a time of crisis.
The Patient Self-Determination Act, in effect since 1991, gives adults with the capacity to make medical decisions for themselves the right to make decisions today about health care treatment they would want to receive in the future if they could not communicate what they want at that time. This law requires that hospitals, nursing homes and other health agencies give all patients information about their right to have a legal document called an advance directive. Dialysis units are not legally required to give you this information, but the National Kidney Foundation and many dialysis units believe dialysis patients should know about the right to make an advance directive.
An advance directive is a legal paper that tells doctors and health care providers how you want them to carry out medical decisions you have made for future crisis care, even if you cannot communicate these decisions for yourself. If you have an advance directive in your medical records, your doctor and other health care providers can take care of you based on your wishes as stated in the advance directive.
There are two basic kinds of advance directives:
Your state's laws may allow you to have both a living will and a durable power of attorney or to combine them in a single form. You may want to speak to a lawyer or contact your state or local bar association about your state's laws concerning advance directives.
Could my family or friend just decide for me without an advance directive?
Laws are strict about this. Hospitals and other health care providers usually will not let a friend decide unless he or she is named in an advance directive. Without an advance directive, your family may have to go to court to have treatment stopped.
What types of decisions can I make in an advance directive?
With an advance directive, it may be possible to accept all treatments recommended by the health care provider, accept some treatments and refuse others, or refuse all recommended treatments.
In your advance directive, you can choose to receive pain medicines for comfort even if you refuse other treatments. You may be able to accept or refuse other treatments, such as:
Some states may limit your ability to delegate to someone else the authority to refuse one or more types of treatment, for example, providing artificial nutrition or water. Some states may require that treatment be continued once it is accepted by your surrogate. It is important to speak with a lawyer or social worker, or get a copy of your state's advance directive forms so you will understand your state's specific laws.
Can an advance directive state the conditions under which dialysis could be stopped?
Yes. An advance directive allows you to tell your doctor, family and loved ones the specific conditions that you feel would limit the quality of life you want for yourself. You may choose to stop dialysis if you have brain damage (caused by a stroke, Alzheimer's disease, etc. ), if you cannot move independently (due to a stroke, paralysis, etc. ) or if you have to depend totally on others. These are a few of the specific conditions that you can state in an advance directive. In contrast, you may state that you want to live under any condition.
If a patient chooses to stop dialysis, how would he or she die?
Deaths from kidney failure do not have to be unpleasant. If kidney failure is allowed to take its natural course, there will be a build-up of toxic wastes from food and the breakdown of body tissues. Fluid will build up in the tissues, which may cause the patient to become short of breath. The doctor may prescribe diuretics or a type of dialysis (ultrafiltration) that only removes fluid, to make breathing easier. Pain medicines may be prescribed if there appears to be any discomfort. The length of time a dialysis patient can live without treatment varies. If a patient chooses to stop dialysis, hospice services (which may include nursing care, social work and chaplain services) may be available to help. Medicare and insurance can help pay for these services. If you have any questions about stopping dialysis, speak with your health care team.
Talking about the following questions with a family member or a close friend may help you understand how you feel about these life and death issues.
National Hospice and Palliative Care Organization
Spanish HelpLine: 877.658.8896
American Bar Association
Commission on Law and Aging
740 15th Street, NW
Washington, DC 20005-1022
Video In Your Hands: The Tools for Preserving Personal Autonomy may be rented or purchased. Booklets on advance directives are also available for purchase
Where can I get more information?
Talk to members of your health care team or any health care provider who must give you information about advance directives. Talk with your lawyer, your local bar association or to the Legal Aid Society in your community. Also, see the list of resources further on.
In order to be prepared for a possible medical crisis, you may want to make sure the following items are in order:
See also in this A-Z guide:
If you would like more information, please contact us.
©2013 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. No one associated with the National Kidney Foundation will answer medical questions via e-mail. Please consult a physician for specific treatment recommendations.